Sometimes I think "why does my day have to revolve around how Dean will be"? Cant I just plan something and then do it and let Dean do whatever he's going to do? I can't do it. I don't know if it's just the kind of person I am and that the controller in me just needs to collect the proper data about his health? Or if he is truly in danger on his bad days? But I guess I also don't want to test it and find out the hard way. I am always "collecting data" about his health. The doctors always want to know and so I watch and keep a tally of which symptoms go together. Is he more dizzy on headache days? Are his headaches predictable? Is his slowed cognition predictable? I like to be the expert on my husband and he certainly cannot be the expert on himself, so it is my job. That is something I imagine is hard for the people who don't live with TBI in their life to understand.
- He cannot self-regulate (I think that's what you would call it). He does not know how to change his activities due to his health. When he gets a migraine, he's laid up in bed...but it's the migraine that's forcing him not him choosing. Dean is pretty one track minded. Every day that he doesn't have a migraine he is thinking one thing - what can I get done today? He is an unstoppable locomotive that wants to be productive and is a genius at coming up with more and more things to do. I've never seen anything like it. I think that's what really tires me! I can't hardly add to my own list because I've got to help him with his list which is constantly expanding! He takes up new projects that require 100 steps each just to implement and he'll have 3 or 4 of them going at the same time. Now to me it just feels like we are spinning our gears endlessly and aimlessly, but since sometimes I actually see progress, I can't definitively say we are just spinning. It may just be how he works. But a non-brain-injured person who had a leg injury or something might think, "oh with my leg, I can't do XYZ, so I'll have to find things I can do"....but not him. He has back problems and mobility issues but his brain injury doesn't take his inabilities into account. I will point out the logistics of something to ask how he is going to do it, and then he will realize "oh, I will probably need help with that part". Yep, that's what I was thinking too...lol.
- He can't self-monitor. He doesn't remember if today was the day he had a migraine. He has no idea that the reason he can't get his words out today is because he was on a bus for 6 hours yesterday with his unit going to a funeral. He doesn't have the forethought to decide not to go to the picnic this afternoon because he has an appointment tomorrow that he can't be wiped out for. I am the holder of all the future plans and appointments and the knower of what activities cause what symptoms.
So I guess I've answered my originial question. It is just too chaotic and confusing for me not to know what Dean can handle tonight or tomorrow and more often than not the few hours of activity I would be going to do isn't worth the not knowing.